A little update and fun news!

Dear friends and family,

It has been a long hiatus for me from writing on this blog. It wasn’t intentional initially but I found that as we adjusted to life post-treatment, taking a break from writing on the blog and from most social media was/has been good for me. "Normal life" was very elusive for awhile and we needed some time to figure it out. I may or may not write occasionally here but will always update here on any health changes for Watts. Promise!

All is well with our Warrior-Boy. He is growing and thriving and catching up on the growth charts (up to 20% in height now...he was at 5% when he went off-treatment twenty months ago). We go to Brenner every two months to check his labs for relapse and (other than a couple of scares that were later resolved) his results have been free of signs of leukemia. We continue to be thankful and never take the news for granted. 

Our days are very normal at home, filled with playdates and homeschool preschool for Watts. This past week he caught up on his immunizations and will soon start going to a preschool class three mornings a week. He is SO very excited. Piper started at a Spanish immersion school this year and is absolutely loving it and is already speaking more Spanish than I can understand. Michael is still working at Hope Chapel and builds things, bakes things, and makes all sorts of things in his free time. I'm embracing the staying-at-home mom season of life and am also counseling a few clients one night a week. And that's us in a nut shell:)

We have found and are continuing to find out what life looks like this side of cancer-treatment, and our hearts are daily filled with much more hope and thankfulness than fear of the future.

And now for the really fun news... we are excited to share that we are adding to our family! I am pregnant and due mid-April of this year. Although we never anticipated having a third biologically, the thought and dream of having another baby started back during Watts’ early days of diagnosis. I think as we walked through those dark days, we saw the beauty and preciousness of life in a whole new way, and the dream of having another little Van Patter began. We are all excited about this little life; Watts is convinced the baby is a brother and Piper is set on it being a sister. We are soaking up the element of surprise and waiting till the baby is here to find out the gender. 
[For those curious/concerned, Watts' cancer was not genetically passed down to him. This new baby is even more unlikely statistically to have Infantile ALL than a random baby at a park.]

Thank you for your continued support and prayers for Watts in the past (and present too, I'm sure) even as I have not been consistent with updates! We are grateful. Below are a few more fun pics of our big kids from the last few months:

Just pictures.

 

Catching up (Another relapse scare)

[I'm sorely behind on documenting Watts' story and also on updating any readers... I'll cut to the chase and say that Watts is doing beautifully and he is still cancer-free.]

At the end of February, Watts began complaining about leg pain. On February 29th, the pain intensified and, by the end of the day, Watts had stopped walking on his right leg altogether and was screaming in pain. Initially, we hoped that it was simply growing pains, but (because Watts' pain tolerance is so much higher than most kids his age) we worried that the pain was too severe for it to be something "normal". We knew also that it could mean a relapse of his cancer. We emailed his team and they responded immediately that we should come in first thing in the morning and to bring him in NPO after midnight.

The team jumped into action when we got there and we came up with a the plan for the morning. His lead doctor told us that when a post-leukemia patient comes in with leg pain, he is considered to have relapsed until proven otherwise. We needed to run labs, do xrays, and then we needed to consider sedating him to do a bone marrow aspiration.

Labs came back normal (which still didn't rule out a relapse) and we moved onto the xrays. The hope was that the xrays would show some sort of injury that could account for the pain. The xrays showed nothing abnormal so we made the decision, upon the recommendation by his team, to sedate him for a bone marrow aspiration. Because the pain was so severe, the team believed that if he had relapsed, there would be evidence of it in the bone marrow near his right hip.

We waited for a sedation suite to come available and Watts had to get an IV. In his three years of extensive medical treatment, Watts has only had to get an IV two times, thanks to his hickman catheter and later on his portacath. The first IV was put in in the ER when he first got sick (it took many, many attempts because he was so dehydrated) and the second IV was put in in the middle of the night when his hickman line broke (after 5 million tries a picu nurse had to be called to our room to finally get the IV in). I was a little nervous about how this IV would go and how Watts would respond, but, after a few attempts, the IV was in. Watts did beautifully.

Watts screamed for us as he was put to sleep but he quieted quickly and the sedation went well.

A doctor on Watts' team was down in the lab when his results were sent in and looked at the slide under a microscope, so we found out the preliminary results very quickly: Watts' bone marrow showed no sign of relapse! We were overwhelmed, thankful, very sobered by the fact that we were getting such good news when so many more around us were not.

Since all of the tests came back with no sign of a leukemia relapse, the team has hypothesized that Watts' body created too many antibodies to fight off prior stomach bug (that he had a week before the leg pain started), and that the antibodies began to attack his leg joints. I can't remember the medical term for this but it is apparently not very common in children. After a few weeks of needing to be carried more than usual and being a little more grumpy, Watts is back to his normal self.

We are so very thankful and reminded, yet again, that each day is a precious gift.

Through the love of God our Savior, All will be well
Free and changeless is His favor, All is well
Precious is the blood that healed us
Perfect is the grace that sealed us
Strong the hand stretched forth to shield us
All must be well

Though we pass through tribulation, All will be well
Ours is such a full salvation, All is well
Happy still in God confiding
Fruitful if in Christ abiding
Steadfast through the Spirit's guiding
All must be well

We expect a bright tomorrow; All will be well
Faith can sing through days of sorrow, All is well
On our Father's love relying
Jesus every need supplying
Yes in living or in dying
All must be well

Mary Bowly Peters (1847) & Matthew Smith (2007)

A little update on Warrior-Boy, Watts. And me.

We just got back from labs at Brenner. All is well, and Watts remains cancer-free (!!).

Watts cried for the first time today when they pricked his finger for labs. It caught me off-guard because Watts is usually the one assuring me that "it just tickles, Mama" and helping them squeeze his finger and talking about "Mr Red". The tears represent our progress, I think, and speak to the fact that labs are infrequent and Watts' memory of his hospital days are already faint ones. This is a very good thing. The nurse and I still both got choked up with him as he cried.

Overall, Watts' labs are where they should be. His lymphocytes are slowly recovering and should be on the low-end of normal within a month. At that point, we will restart the process of getting Watts re-immunized with his local pediatrician. The chemo wiped his whole immune system clean when it was fighting off the leukemia cells.

Other appointment details:

• Watts' weight is a little below 50% and his height is inching its way past 10%. His height and his weight have been suppressed over the last couple of years due to the chemo but he seems to be slowly catch back up. 
• He has been having some minor intestinal issues. We are going to be monitoring this at home this month and if the problem persists, he will have some GI testing done next month.  
• He started on allergy medication due to having a runny nose and cough for the past 5 months. His problem with allergies, his doctor said, is most likely a side-effect of the two years of having a compromised immune system. 
• Developmentally, Watts seems to be right on track with where he should be. He speaks in full sentences, knows his colors, some of his letters, and last week, he started writing his name from memory. Two years ago, Watts was meeting with a physical therapist, occupational therapist, speech therapist, and being followed by a child life specialist. Today, we are shocked and unbelievably thankful to say that he seems to be a fairly "typical" three year old.  
• [Side-effects from the chemo (ranging from minor learning disabilities to eye problems to heart problems to secondary cancers) are all things that we will be monitoring for most of his life.] 

Our life looks fairly typical these days. And what a gift that is! As Watts' immune system has been recovering over the last few months, we have slowly started being able to do more normal things. We switched him from the small Infant nursery (we had him in there for about a year because of there was less risk of germ-exposure with non-mobile babies) to the 2-4 year old Sunday School class at church. We have gone to the Chick-fil-a play place, to an indoor jumping park, to the movie theater, to the children's museum, and a list of other places that have been off-limits since Watts started treatment. Since we kept Piper out of school this year, it has been super sweet to see their brother-sister relationship blossom and for them to have extended, non-medicated times of playing together. Both Watts and Piper seem to be thriving and Michael and I are deeply grateful.

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The journey for myself has been a bit murkier over the last several months. It is difficult to write that (hence the lack of posts over the last six months) because it can feel horribly ungrateful and insensitive to other cancer families. But it is also my truth and I want to be honest as I write our story. The post-cancer treatment stage has been a confusing one for me. While Watts was in active treatment, we had a battle plan and I knew exactly what I had to do to try and get my son well. It was a hard and dark season, but it was also a very intentional time and I knew what I had to do each day. While the end-of-treatment was much anticipated and brought great joy and relief, it also felt a bit like I was shoved off a cancer-fighting battleship and told to swim the rest of the way to shore with my kids on my back. But I couldn't quite remember how to swim. Or where the shore was. [This is a terrible analogy but the first one that came to my mind.]

It is an awful lonesome thing to finish cancer treatment for your son and to simply have to wait to see if the treatment will work. 

It is an awful lonesome thing for your son's team to tell you that they've done everything they can do and that now you just have to go home and wait. 

It is an awful lonesome thing to walk (what feels like) between two worlds... To be not fully in the cancer world any longer, thank goodness, but to also struggle to know how to re-engage with the non-cancer world. [And to live in the knowledge that we might have to step back into the cancer world at any moment.] 

It is an awful lonesome thing to struggle to remember that God is with me in the daylight and "normal days" too. I have so desperately needed Him over the last couple of years and have relied on Him so immensely during our dark cancer season, but somewhere along the way, I forgot how to recognize Him when the sun is shining and life is busy and the darkness seem to be primarily going on in my heart. [I'm sure I have given Him quite the laugh as I've looked for Him and waited for Him. I am His beloved daughter and He is with me always and always. It is just that the darkness strips all other distractions away till I am face-to-face with the truth. I am loved and I am His.]

I've never been very good at waiting. I've never been very good at knowing what to do with fear. Stripped of Watts' battle plan and launched back into the sea, I have had to come face-to-face again with my fears of losing my son and my cancer-mama PTSD (it is a real thing, y'all) and had to wrestle through what it looks like to not wait (and have my life on hold till Watts is considered cured in 4 1/2 years) but to instead learn how to LIVE. I have made much progress but still have a ways to go.

So, I just wanted to say that I'm still here, despite the blog writing hiatus, but I'm relearning how to swim. Thank you for your prayers for our family. We have been sustained by them.

Surgery update and Fear.

Watts' surgery went well, friends. Watts was calm and peaceful the entire pre-op time and never asked for anything to drink or eat. We were unable to get blood-return from his port, but even through that, Watts smiled and charmed us all. Our last glimpse of him, he was being walked down the hall by the anesthesiologist with his surgeon following behind, running his fingers through Watts' hair.

The port gave the surgeon "a run for his money" and required an extra incision to remove it, but the port was removed and Watts did beautifully.

Watts is now back to his normal speed and apart from some discomfort from his port-site, is completely back to normal. We are so very, very grateful.

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 I began writing the post above about a week ago but haven't been able to post it because I've kept writing and erasing, writing and erasing. 

This pediatric cancer world is a hard one. There is beauty in the faces of the little warriors and such joy in milestones reached, but there is also such darkness and brokenness and pain. On the same day as Watts' milestone surgery, another little girl at Brenner relapsed. Her diagnosis is the exact same as Watts' and she is only four months ahead of him in post-treatment. We are aching for their family. And hoping! And praying! But, first and foremost, aching...because this is not at as it should be.

Fear has been at my heels this week and I've been wrestling again through what it means to trust Him, what it means to live without fear in a painful, broken world, and how to let go of the grip I want to pretend that I have on my kids.

It all seems a bit beyond me and I feel like a small child, terrified of the dark, watching the sun set out the window.

I've written a page-full (that I'm now erasing) about the Lord and the Gospel and the darkness but I would simply be preaching it to myself and, if I posted it, I'm afraid it would seem as if I have this all figured out, which is not true. There is so much wrestling still. Daily, hourly.

The hymn below is one that we sing over Watts each night. It's lyrics are powerful and a beautiful reminder to our fearful hearts... And a reminder that perhaps it is when we feel the most like little children, desperate for our Papa as the night falls, that He has the most room to work and be glorified in our lives. Abide with me, Lord.

Abide with me; fast falls the eventide;
The darkness deepens; Lord, with me abide;
When other helpers fail and comforts flee,
Help of the helpless, oh, abide with me.

I need Thy presence every passing hour;
What but Thy grace can foil the tempter’s pow’r?
Who, like Thyself, my guide and stay can be?
Through cloud and sunshine, Lord, abide with me.

I fear no foe, with Thee at hand to bless;
Ills have no weight, and tears no bitterness;
Where is death’s sting? Where, grave, thy victory?
I triumph still, if Thou abide with me.

Hold Thou Thy cross before my closing eyes;
Shine through the gloom and point me to the skies;
Heav’n’s morning breaks, and earth’s vain shadows flee;
In life, in death, O Lord, abide with me.

Port-removal Surgery

Tomorrow morning Watts' is scheduled to have his surgery to remove his port (some cancer moms call this the "de-port-ation"). This surgery should be uncomplicated and brief, and we'll be home in time for Watts' nap, Lord-willing.

This surgery is monumental for Watts and is being done in hopes that all transfusions and treatment is behind him for good. At least that is how Michael and I are viewing it! His surgeon said something to the effect that Watts isn't using his port enough to warrant the risk that having it in brings to his little body (bacteria being introduced each time it is accessed, blood stream infections, etc.). So there's that side of it too.

After the surgery, a few things will change in Watts' post-treatment care. Watts will have his finger pricked at Brenner for his labs instead of accessing his port each time. His surgery will also change how we will respond to fevers at home. In the past, whenever Watts had a fever of 100.5 F or higher, we had to take him to Brenner to start antibiotics and have his labs checked and blood cultures drawn. These ER trips would typically turn into long stays because his counts were so diminished (and his team would want to keep him until his counts started to recover) or because a few times he had growth in his lab cultures that meant there was some sort of blood stream infection going on. Now that Watts will be without a Hickman line or a port, his risk of these infections drops dramatically, and we can start monitoring fevers at home.
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Overall, we are thankful to be at this point and plan to celebrate this milestone once Watts feels up for it after his surgery! Please do still keep us in your prayers tomorrow. For Watts and his little heart to not be frightened as he heads into surgery, for Dr Pranikoff's hands to be steady and for there to be no complications whatsoever, and for Michael and I to rest our nervous, weary souls in Him. He is faithful and He is good.

Good appt!

 I posted this to instagram (you can follow me there for more frequent pics) but wanted to post it here too. Watts had two appointments yesterday and both went great! His labs showed NO sign of relapse, his lymphocytes are recovering, his team agreed that he could stop his prophylactic antibiotic (after 2+ years of continual use and endless intestinal issues), and his port removal surgery has been scheduled for next week. What a day! We are so thankful and so relieved. Every appointment feels a bit like walking to the edge of a cliff and wondering if we are going to be jumping off again. What sweet relief when the doctors tell us that all is well!

Today we rejoice in Watts' good news, all while aching for those who didn't or won't be receiving good news about their boys and their girls. Lord, be with them.